Yesterday I had an assessment by Social Services for Direct Payments. I’d been waiting about seven months for it after being assessed as ‘Urgent’. The Social Worker was fine – we talked through my condition, how it impacts me, the average day and what help I need.

What I did find interesting during the assessment is that after I was asked to give an overall idea of the help I’d ideally like – she then gave me a list of everything that my Disability Living Allowance was expected to cover, and so Social Services would not. From my list this included all cleaning, gardening, treatments not covered by the NHS, help with pets, and any activities even if they related to quality of life/better health and more.

As an aside, while I was aware of the cleaning issue, I am appalled that Social Services won’t help people with disabilities with cleaning at all. It’s not a cheap service to have, and I find it totally impossible to do such physical tasks as hovering, dusting, clothes washing, changing the bed sheets – and there’s people a lot worse than me out there. So they’ll pay to get you out of bed, and showered – then leave you in squalor to fend for yourselves?

But, back to my main point, I thought it was interesting how far she expected DLA to stretch. I currently use my DLA for an adapted car that has a hoist for my wheelchair. Without this, I couldn’t leave the house – as my wheelchair won’t go on buses, and wheelchair-adapted taxis are a rare sight to behold in my town (and usually double the price). Other people will often use this payment to hire a wheelchair from Mutability, or on taxis to get out and about.

Out of the rest of my DLA I and many others pay for things like extra heating, carers, mobility aids, therapeutic devices, special clothing/shoes, food that’s easier to cook (pre-prepared), the higher rents of accessible accommodation, medications, supplements, extra washing loads, specialist exercise programmes, special cushions, adapted items, insurance for wheelchair/scooter, petrol for additional car journeys (doctors/hospitals/travel to specialists often miles away, physiotherapists, other therapists, assessments as well as journeys most people would walk – but you have to drive instead) and so much more.

Of course people with disabilities are statistically more likely to be on a lower-income than the average person, even when able to work. So DLA may also help towards rent, bills and normal day-to-day living costs.

When I was trying to obtain an electric wheelchair through the NHS, as I am physically unable to manually propel – I explained I was using my Mobility Payments on a car that I needed to get to work. The assessors response was that I should be using it on a wheelchair. I pointed out that if I used it on a wheelchair and gave up my car, the wheelchair would have to live in the garden – and I would have to live on the sofa, as the car was vital in transporting the wheelchair, so what would be the point of that? She had no answer. It seemed it was their policy to be telling people to spend the DLA on wheelchairs too.

But it doesn’t cover a fraction of the extra costs I have for being disabled, and while I totally understand there isn’t a limitless supply of funds – it doesn’t help when agencies are putting more and more strain onto the benefit. Exactly how far do they expect DLA to go?

I don’t tend to cry. I mean – give me a sad film, or book and I’m sobbing like nobody’s business. But in pain, randomly when it’s all just got too much? Not that often. (Although let’s take my last year of work out of the equation, because dear god I was a mess.)

But I have cried in my last three appointments, and all three times it was around the same topics. Frustration at the “system” and exercise.

The last few months have been tough for me. My condition seems to have gone into haywire, insomnia has struck big time, my pain levels are pretty damn ridonkulous and I’ve been pretty much stuck in the house. It’s always tough when you have a flare up, because of the fear this is your new reality. This is the next downward slide, on a slide that’s been pretty slippery for the last eleven years. At the same time there has to be hope. Sometimes I pin it on myself – I’m going to try this supplement, and do these new stretches eight times a day until every muscle in my body is strengthened and then…

And then I’m doing the most basic of basic stretches, and put my joint out, and I’m lying on the floor with half my body shaking in spasm, trying not to throw up and thinking if I can just make it back to the sofa and not move for five days, it will be okay.

So then I pin that hope on others. That I’m going to go to the physio and they’ll give me as much Hydrotherapy as I need, and then I’ll see the pain consultant and they’ll read the research I’ve found around a specific new medication that looks really promising and will give it to me without a fight, and then…

And then I’m sitting with the physiotherapy who is giving me the lecture that they don’t have infinite resources, so I can have one more block of hydrotherapy next year, and then that’s it. I’ll have to find somewhere else to go, and I’m trying to explain there is nowhere else, nowhere accessible, nowhere affordable, and I’m crying because I just want them to say yes, no problem, for once.

And then I’m at the pain consultant – the one that’s meant to work with people with Ehlers-Danlos Syndrome a lot, except she’s getting the most basic elements of the condition wrong. She does read the research I push at her, and she turns and says – “Yes, we do this here.” There’s a pause, my heart races. “But not for people with your condition.” And then she’s lecturing me – you need to exercise, and push through the pain, it can’t be that bad. And I’m trying to tell her, explain that I’m not talking about aching muscles the next day after a session at the gym, but agonising and consuming pain, partial dislocations – bedbound for days, and I’m crying because she doesn’t get it.

And then I’m at the osteopath, and she has her elbow in my lumbar spine, and she says, “Have you considered exercise?” And I sigh internally, but politely try to explain the same old issues, that I do exercise – but it has to be extremely limited, and she’s pushing it and pushing it until the tears are there again and then she’s backpedalling, and sorry.

It’s so frustrating, I hate crying – and on their own are such minor things. It’s the build up of it all, the feeling they’re just not listening.

But I need to wipe my tears, because it gets me nowhere, and push on with what I can. I’ll get there.

The letter from the Pain Clinic arrived today. Remember he’d agreed to say I needed massage treatment? It was the one silver lining of the appointment – so he can’t treat me, but at least I’ll hopefully get some help for massage?

HE DIDN’T WRITE IT.

Yeah, thanks. Helpful.

I then called his secretary, who asked him again about it for me. He came back (through her) to say he wouldn’t write that.

Sometimes I have those days – although in my case, it always seems to happen in the middle of the night. One of those oh god why does nothing go right things?

Sometimes I’m not sure why I’m so anxious, and why somethings become such a big deal. I’m currently trying to get my wheelchair replaced via grants, and in my desperate research to find any organisations that may actually give me any help stumbled across some research that showed people with Ehlers-Danlos are highly susceptible to miscarriage. It’s not like I’m anywhere close to having a child, or even know if I will have them – but if we didn’t have enough against us having children already. First is the high chance of giving the kid the condition in the first place – and it possibly being the ‘die early’ type, not just the painful type. Then there is the possibility of my hypermobility vastly increasing during pregnancy – to the point of constant dislocation, and issues giving birth with the pelvis. Then there is the issue of having to give up the morphine for nine months, or have the child be born addicted to drugs and have to spend the first few weeks going through withdrawal in intensive care. So the cherry on the top is that there is a good chance the baby won’t survive anyway. Fabulous. I don’t mean to feel sorry for myself, but I’m still learning so much about this condition. I’ve only been diagnosed with it for a year – and am still getting to grips with how it all works.

Then back to the wheelchair. I bought this chair in July. Well, when I say I did – actually some members of my family clubbed together to buy it for me, but we made the error of buying it from Betterlife Healthcare – a company we now know to have appalling customer service, questionable ethics, and a very much ‘we don’t care your wheelchair is a pile of crap’ attitude.

It’s brilliant to have a chair that jams on everything going, let me tell you. I particularly loved in when my chair stuck fast on the flat ground when coming out of a church, with 200 wedding guests behind me. Or when my mum tried to unjam the chair in a shop, and the footplate came free so quickly she fell on the floor and her arms and legs were covered in bruises. Or when I left work the other day to pop to a shop and it jammed on a flat pavement – and an 85 year old in a wheelchair, with an oxygen tube, had to stop and help me!

And yes, we’ve complained. Their attitude can be summed up with ‘haha, we have your money, now go away.’ I don’t actually want a refund, I want a replacement – because a refund will leave me without a goddamn chair, and it was so incredibly hard to find a chair that met my requirements in the first place (and I promise it was basic needs, not ‘it must be glittery pink’.) I have searched for a new chair, but the next type that meets the standard of being light enough to lift into a car and foldable seems to jump up by about £4000.

Then I found this charity called Action for Kids, which despite its title is meant to offer help getting a wheelchair for up to 26 year olds. I contacted them months ago, and was promised a visit which has yet to occur, despite constantly chasing them. When I phoned to find out their requirements they seemed very confused, and they gave me an extensive medical form to fill in – of which listed only very specific conditions and total paralysis were mentioned, which is very confusing because people with those conditions would qualify for a wheelchair from the NHS as they would be totally unable to walk.

Oh yes, did you know the NHS has a wheelchair service? When I first was referred for chair a few years ago their policy for an electric wheelchair was that you had to use it indoors and out. As I lived in a postage stamp house I couldn’t fit a wheelchair in it, so that ruled that out and they gave me a manual one instead. This was great, except I manage about a quarter of a turn before my shoulders and arms go into spasm, and don’t recover for about a week, which meant mum was forced to push me, which is not easy. You think the world is wheelchair accessible? There isn’t much I can say, other that it’s not.

So then we skip forward to buying the crap electric wheelchair, and it constantly breaking down. We then moved into an accessible bungalow and I am now having to use the chair a lot more now, even in the workplace. So I contact the NHS again and they inform me the policy has changed – they now only give them to people who cannot walk a step. Ever. I explain I cannot use a manual wheelchair. She’s sympathetic. I tell her my mum has damaged both her shoulders from pushing the chair, and lifting it in and out the car. She’s even more sympathetic. Then she tells me tough luck, policy is policy. Okay, she didn’t use those words – but it was implied.

And so I am here with a wheelchair which currently has no footplates. I got replacements a couple of weeks ago, but they both snapped off last week. On even ground. Action for Kids implied it would be months and months before I got near the top of the list, plus they judge you on whether you actually deserve a wheelchair (i.e. not on medical grounds, but there is a section on why you think you should be given one).

The warranty for my chair runs out in July. If I ask for a refund for the chair I will struggle to work, run the access group, or go out anywhere. If I don’t I’m stuck with it forever.

I need to apply for grants, but I just don’t have the energy at the moment.

I kind of need a shoulder to cry on right now, as it’s all a bit overwhelming, and at the same time I need someone to say oh pull it together and stop whining, you aren’t having babies any time soon, and it’s just a fricken wheelchair!

Once again it’s not a great day physically. Yes, I know this is a reoccurring theme and it’s dull! I can’t function in the morning though, but drag myself out of bed until one of the girls in the ward tells me I’m mad, and to get back in bed. There is a strict ‘you must attend sessions’ theme, and we’ve all worried all week that if we put a foot wrong they will kick us off, but doing something physical is just completely impossible. A message is sent to the physios running it that I can’t make it, and I fall asleep.

I wake an hour later to the doctor by my bed, checking I’m okay. A bit embarrassing they actually sent a doctor, when this is a quite normal part of the condition.

The sleeping helps, and the next session is relaxation. I’m able to follow it better than the day before and the technique used is called progressive muscle relaxation. You take each muscle in turn from the toe to the head and tense them, then relax them. It’s an interesting taster, but the results would be better at home somewhere in comfort. We’re just on normal chairs – and I tend to need full neck and head support to achieve relaxation.

I then have arts and crafts and continue glass painting. I still find the lady that does it very patronising.

Next up is cognitive therapy, with the theme on stress. No information is given that I would actually find useful on a daily basis. After the session I head back to the ward to sleep again. I wish I could get through a day without this.

Later on I have physio which I enjoy, but straight afterwards we have an hour of sports which is too much at once. My shoulders are in spasm from overworking it in physio, and every sport they have is based on arm movements – table tennis, short tennis, badminton, catch. The physio with us is interested in getting new things, and we suggest more lower limb based exercises (while remaining seated), and possibly something like mini golf which is more of an underarm movement. I play a game of table tennis with a member of the group and it’s much better than the week before! We end with a session of kicking a massive football to each other.

Table tennis Credit: Mishahu

My dad comes to visit me around 5pm, with the idea of going to the friends and family session. I was really pleased they were putting this on, as I hoped they would help explain my condition to him which I have struggled to do. Instead I’m told ten minutes before he arrives “It’s cancelled. Whoops, didn’t anyone tell you?” and so instead we go to the cafe next door for dinner. On the menu they have burger and chips, and that’s it. We order two of them, and are told they only have one. It’s actually worse than the hospital food!

He only stays for about an hour, and I then go straight to bed and am asleep by 8pm. It’s the best night’s sleep I’ve had so far.